OTTAWA, Canada November 4, 2013 A CHEO-led multi-site North American study, headed by Dr. Robert Klaassen, lead investigator at CHEO and associate professor in the University of Ottawa's Department of Pediatrics, has confirmed the validity and reliability of a quality of life measurement tool for children and adults with thalassemia major. The tool was created between 2006 and 2009 through the combined efforts of CHEO, the Hospital for SickKids and Laurentian University.
Symptoms of thalassemia major, a rare genetic condition, include severe anemia in the first year of life, chronic fatigue and failure to thrive. The only cure is bone marrow transplantation. Unfortunately, this option is available only to a minority of patients.
Patients with this blood condition receive multiple red cell transfusions in any given year, which inevitably leads to iron overload, as the body has no natural way to get rid of iron. However, pharmaceutical companies are creating therapies to treat this condition. While in the past, medication was commonly administered by a needle in the arm for 10 hours every night, advances in medicine have introduced oral agents. All treatments are expensive and have side effects.
What interested the research team, whose findings were published today in the British Journal of Hematology, was the overall quality of life for these patients over the long term. "Quality of life is moving from a research tool, where studies are done to show that one drug is better than another drug, and it's evolving into something that practitioners will use to optimize individual patient care," said Klaassen. "The future of health care will incorporate quality of life surveys into electronic patient records, so physicians and allied health care professionals can build a care plan around a patient's physical symptoms, emotional state, support networks, environmental restrictions and so on."
The disease-specific quality of
|Contact: Adrienne Vienneau|
Children's Hospital of Eastern Ontario Research Institute